Tuesday, April 6th, we met with Dr. Taylor, Lindsey's oncologist. We (Dr. Taylor, Bob, Bob's dad, and myself) jointly decided that the best next step is to focus on Lindsey's quality of life. The combination of meds affected her in a way that created significant challenges for everyone involved. Since stopping a combination of medications on March 28, which included the chemotherapy, some of the behavior issues have stopped. Life has become more "normal" and we have not had any occurrences of significant anger, tantrums, or defiance.
We're learning a lot through this journey. Our perceptions of practices utilized are changing. One of those perceptions is Hospice. We have historically thought of Hospice as an organization that is engaged when an individual is quickly approaching the end of life. That perception was wrong. The organization really focuses on both hospice and palliative care, which means that patients can have the expertise of their staff and individualized care at any point during a serious illness. The organization can do many things to maximize the comfort of the patient AND the family. Palliative care can begin at any stage of a serious illness, is available for patients while they receive or seek treatment, and it is often provided earlier depending on the patients needs. Hospice is a special type of palliative care for people who have life-limiting illnesses and who are focused on comfort, rather than a cure. At the beginning of round two of Lindsey's illness, Dr. Taylor indicated that with Lindsey's high-grade Glioma tumor we may have 6 months with Lindsey if we opt for no treatment. Pursuing treatment may extend life to a year. We will cherish every moment we have and continue to pray for a miracle.
Hospice is now working with us. Registration occurred Tuesday night. The first visit with a Hospice nurse will occur today.
We are seeing signs of our previous Lindsey. For the first time in 4 weeks she actually watched an entire episode of The Survivor, one of her favorite shows. She had a great day with her other "mom", Aunt Nancy as they spent the day together. I love this photo of Nancy and Lindsey. God has given us a great family and a group of friends that have been incredible support through this journey. We are thankful and truly blessed.
As I sat here and read your blog I couldn't help but to shed tears - again.I can't even begin to imagine what all of you are going through. Sandy - thanks for sending the pictures and card. They are hanging up in my wall of fame next to my desk. I can't believe that you found the time to do something so thoughtful. Unnecessary, but appreciated. Your entire family is awesome. Lindsey - I'm writing this note to let you know that I love ya and think you are a real life hero. I remember when I first met you, the strong lady with the baseball cap. You were so kind. I remember thinking that you must be the strongest 14 year old on the planet. How could someome with such a burden be such a blessing to all those around you? In high school you were a HUGE blessing to me. In 21 years of teaching I have worked with about 6,000 students and I can't remember a lot of their names or what class I had them in. I remember so many things about you because you were such a gift from God to my classroom. I don't know if you remember this...but when you were in Family Relations class we had to talk about a lot of controversial issues about family, marriage, raising children, religion, values and etc. They were tough topics for any group of people, but really tough for teens. Your peers daily reflected the values of today's society. You reflected Jesus Christ. You were like an angel sent straight into my classroom. You said things that I wanted to say (but couldn't because of the many "rules" placed on teachers). I admired your wisdom but more than that I admired your guts. There were other kids who felt the way you did, but didn't have the courage to speak up for what they believed in. You have NEVER lacked guts or heart. Your pure heart, amazing smile and courage make you a hero. Keep fighting - every day you do, you prove once again that you are an angel from God. I know there is a great and mighty God. You will be a beautiful bride and I expect to see pictures of you in your dress on the blog soon. :)
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